Stolen by Alzheimer’s: A daughter's story

CHERYL METIVIER

Absolutely nothing prepared my family and me for the moment when we had to acknowledge that the mind of our best friend would be forever stolen from us.

That moment came at different times for each of us. For me, months of denial culminated in the bitter truth. The reality, that no amount of supplements, hydration or rest would cure what ailed my mom, Lynette Bruce, was like having an out-of-body experience. The “ostrich option” was no longer available to me.

I vividly remember the moment that pained and confused me.

For all kinds of cliche, corny reasons, Christmas at my childhood family home was everything. The loss of my grandmother, the family’s matriarch, at 96, in 2011, threatened to erode many of our precious Christmas family traditions.

It was my mom who ensured that the family stayed together, and took over the responsibilities that she and granny had shared together. She handled it all. We supported, but she took the lead.

In the ensuing years, she suffered what her doctors described as a series of mini-strokes, and eventually a more substantive one in 2015; but miraculously recovered from that one as well, with mobility, speech and memory intact.

But we recognised that she could no longer handle things as well as she thought, so we began to deliberately lighten her load.

By the time the 2016 Christmas season came, we decided she should no longer be burdened with the stressful aspects of holiday preparation, so she spent that pre-Christmas week at my home. Every detail of the week’s activities was planned. A beach day, downtown sightseeing, leisurely drives, movies, a dinner outing, and we finished up with a day at the mall.

Returning from the mall, armed with a phone full of pictures to time-stamp our outing, my husband excitedly approached her to ask about her day.

Her response almost floored me.

Luke: “So how was your day?

Mom: “Oh, just wonderful!”

Luke: “Where did Cher take you today?”

Mom: “Boy, I have no idea...”

Luke and I looked at each other, unable to process this moment.

I quietly retreated to the bedroom and the tears flowed. We were now staring head-on into the face of Alzheimer’s.

Luke immediately launched into research mode, sharing dozens of YouTube videos on the topic.

But it was too much for me, and too soon. Viewing those videos would be an admission that my mother was a casualty of this undignified disease. I wasn’t ready.

It was as if that defining moment gave way to accelerated confusion. She was constantly forgetting where she was. She would whisper to me, “Cher, whose house is this, girl? We have to go home just now?”

Eventually the time came to take her home. On the drive from my home to Moruga that Thursday before Christmas, Mom didn’t recognise much of what should have been familiar territory to her. She was mostly lost.

I took her into the house and settled her in. She was happy to be back in her familiar environment, and immediately started looking for ways to busy herself. I encouraged her to relax, and continue her chores the next morning.

I chatted briefly with my sister, conceding that I had seen what she had been trying to tell me. I can’t recall all the details of that conversation. I was too anxious to avoid the impending overflow, so I left quickly.

As I entered the car, the deluge came. My mother, the woman who had taught me almost everything I know, had no idea where she had just been; or even where she was. I just wasn’t ready for this.

The drive home was a blurry affair. The tears never stopped. Once home, I composed myself long enough to call her to report my safe arrival. She was delighted. She seemed "normal."

I was confused. I was angry. The tears flowed and I cried myself to sleep. Here began a journey that forever changed our lives.

So many decisions had to be made from this point: many adjustments to her schedule and ours so we could take care of her. I remember calling my older brother to tell him Mom really seemed to have Alzheimer’s.

He received my opinion respectfully, but it was several months later before he too was fully convinced. This was also true of my now deceased younger brother. I guess that the notion of this woman who had been everything to all of us, this tower of strength and wisdom being struck down by this undignified disease, was too much for them to immediately contemplate.

Fortunately, my sister, Anaka Bruce, lived in a house on the same compound as my parents. In the months that followed, we gradually weaned Mom of many of her responsibilities, but she often strenuously resisted and accused us of “treating her like an invalid.”

It was only after she accidentally burned her thigh with hot water and when, during the doctor’s visit, we were admonished, in her presence, not to permit her to do certain tasks, that she became less resentful.

It was very interesting, though, that even throughout this illness she never lost her pragmatism. She was cautioned by the nurses at the health centre clinic she attended to manage her sugar intake and her blood pressure, and throughout her battle with Alzheimer’s she was always mindful that her numbers were monitored. When my daughter would offer her cupcakes, she would refuse, saying, “Remember, I am diabetic, I have to monitor my sweets.”

Her journey was sporadic and often very emotional. I remember walking into her room once to find her crying. When I asked what was wrong, she said she felt bad for giving us trouble, but she couldn’t help it. I convinced her that she was no trouble and asked her why she felt that way. She explained that earlier on, she could hear herself “rambling,” but she couldn’t stop. She said she felt like there was cotton in her head and she couldn’t get the correct words or information out, and she was so ashamed.

At times like those I took the opportunity to remind her of how amazing she had been to us, and what a privilege it was for us to care for her.

We looked on as the Lynette we loved slowly left us. I can’t recall at what point our focus shifted from sadness to the easy task of making her happy. Easy, because she continued to be one of the most content people ever; always appreciative of the smallest acts of kindness. So rather than focusing on the fact that she was forgetting our names, we made her photo albums, labelled with the names of all the most important people in her life. She loved this!

Rather than lament that her short-term memories were gone, we engaged her when she took strolls down memory lane, and refamiliarised ourselves with the names of her childhood friends; of street names and village characters, experiences, people and stories that mattered to her over the years.

She loved word searches and she loved reading, but during one of my visits I noticed no puzzles had been completed since I was last there. She was dismissive when I asked, but eventually, she relented, “The letters go everywhere Cher.”

“Let me help you,” I said.

I took up one of her favourite books on God’s favour.

“Let’s read,” I said.

Pointing to each word as I went along, she started to follow and read aloud with me by the second paragraph. We finished that page with hugs and tears.

One morning while at work, my phone rang. It was my sister. She was crying. I braced for the worst.

“Nakes?” I said.

“Cher, we can’t find Mom,” she responded.

I felt like someone had forced a boulder down my throat and it had landed heavily in the pit of my stomach.

“Where’s Daddy?” I asked.

“I just woke him up. He wasn’t feeling well last night and took cold meds. When he woke up he didn’t see Mom, and we can’t find her,” she said.

That day was one of the scariest days of my life, but thankfully it ended well. Mom had awakened disoriented, and was intent on going to her childhood home in Fyzabad. She had lost her way and ended up falling while trying to navigate through our neighbour’s garden. My sister found her lying crouched on the ground, crying.

I realised then how much Alzheimer’s steals the dignity of those it afflicts and, to a certain extent, of those who care for them. I was unable to function at work for the rest of that day because I was a crying mess.

After that incident, we committed to get additional support for my sister. This help came in the form of the most patient and empathetic caregiver from the Ministry of Social Welfare. Delisa Lendor helped restore my mother’s dignity up to the day she died. Mom wanted for nothing, and she loved her dearly.

Even though my family and I continue to deal with the sadness of losing our Lynette, I am thankful that she is no longer suffering. I am thankful too, that in her final moments, she appeared to have been restored. She looked at my sister, called her by name, thanked her and blessed her.

To people dealing with the challenges of caring for someone with Alzheimer’s, I just want to say that whether you use traditional medication or explore alternative meds to treat your loved ones, you should also keep focused on creating happy moments that will bring joy and peace.